‘What choice do we have?’: the difficult burden of family caregivers

ByDaniela Lamas

November 27, 2018

Adobe

The meeting with my patient’s family is about to start. Her father smiles hopefully in my direction while her mother clutches her purse to her chest.

They must be anxious. Their daughter, Nohely, is nearly 30 years old, with cerebral palsy and learning disabilities. It sounds like she had a good life before things went downhill: a day program that she enjoyed during the week, friends and teachers who cared about her, Zumba class with her father on the weekends, and loving parents.

Then a cough turned into pneumonia. Nohely needed a breathing tube, then a tracheotomy to provide a more permanent connection to the ventilator that has been breathing for her. Six months have passed since she first got sick. Medically, she’s ready to leave the hospital, so we are having this meeting to talk about sending her home.

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Nohely’s father speaks English but her mother speaks only Spanish. They both need to be able to understand what is being said today, so the case managers boot up the “Interpreter on Wheels.” A pleasant-looking young woman with long dark hair appears on the screen, introduces herself to us in Spanish and English, and we’re ready to begin.

As the pulmonary doctor at the long-term acute care hospital where Nohely has been cared for, it’s my job to recap the facts. I explain that Nohely has grown strong enough to breathe on her own through the tracheostomy tube in her neck during the day, which is good news, but that she still needs the ventilator at night and might need it forever. For her to go home, her parents — who have no medical training — will have to learn to suction sputum out through the tracheostomy tube. They’ll need to connect Nohely to the ventilator each night before she sleeps, and react to the alarms without panic.

My eyes shift to the screen as the interpreter translates my words from English to Spanish. Her parents nod. OK. What can they say, really? We offer impossible choices — return home to this unimaginable new life or send your beloved daughter to a nursing home. Her mother looks exhausted, and I remember that she works nights cleaning office buildings.

The physical therapist speaks next. She tells Nohely’s parents that during their daughter’s time in the intensive care unit, she grew so weak that she’s now having trouble walking. We hope she can get back on her feet, but until then she will need braces on her legs and a wheelchair to get around.

The smiling interpreter translates again. From her parents’ response, we learn about the seven stairs that must be navigated to enter their home. They are far too steep to install a ramp. One of the team members asks if there is a back door. The answer is no — and there’s no side door either. That prompts one of the case managers to ask if maybe there is somewhere else that everyone can live. My patient’s parents look surprised when this is translated and shake their heads.

Nohely’s father assures us that in an emergency he’ll do everything he can to keep his daughter safe. She is not even 5 feet tall. He will pick her up and sling her over his shoulders if he must. We know he loves her, but this isn’t the right answer. One of the nurses suggests an outdoor lift and a company that might be able to install it, but no one is certain whether it would be covered by insurance.

Let’s say a way is found to let Nohely safely enter and exit her home. What happens to the day program? Someone will need to find out if its staff can manage the tracheostomy tube and if the facility is equipped to suction sputum from her airways if she runs into trouble during the day. If not, Nohely will have to stay home. Yes, we know she misses her friends. We know the day program is important to her. No one knows what else to say.

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Around this point in the conversation, the face on the computer screen freezes and then goes dark. The Interpreter on Wheels relies on a temperamental Wi-Fi connection and we have to log off and back on again. We’re quiet as we wait, all of us staring together at the blank screen. The first try doesn’t work and we have to reboot. Nohely’s mother and father murmur in Spanish. I wonder about outdoor stair lifts.

It’s almost too convenient to see our virtual interpreter and the shaky internet that connects us as a metaphor. Even when we all speak what is ostensibly the same language, our understanding of each other’s worlds is superficial at best. For the hospital staff members, this is one of many meetings on an average Tuesday. But for Nohely’s parents, it is something else entirely. Yes, it is remarkable that their daughter will make it home again and, yes, they are grateful, but their life has been upended.

As doctors, we ask so much of family caregivers, these innocent bystanders of critical illness. We often assume they’re able to perform complex medical tasks that take those of us working in the hospital years to master. Even for families with a lucky combination of resources and personal resolve, it is an unfathomable responsibility. For families in which caregivers lose jobs or whose own health problems come to the fore, it is sometimes impossible.

Sitting in this room, we can’t yet know how it will go.

It takes a few tries, but the Interpreter on Wheels comes back online. It is a different person, a man this time. Through him, we explain that Nohely will still need the feeding tube when she gets home, so her parents are going to have to learn how to clamp and unclamp the tube and connect it to the liquid formula, as well as to make sure the tube and the skin around it stay clean to prevent infection. Oh, and they also need to buy a chair to help her into the bathtub. These cost about $50; perhaps they can find a used one.

One of the nurses asks if they have any questions. Nohely’s mother trains her eyes on the floor; her father’s perpetual smile has grown thin. No questions for now.

We get up. We shake hands. They head toward Nohely’s room, where she has been amusing herself with TV and watercolors and her favorite dolls. She doesn’t know the details of our conversation. She’ll be glad to see her parents. I hope they will leave soon so she can sleep.

I don’t work in this long-term hospital every week. By the time I see Nohely and her family again, they will most likely have grown familiar with the ventilator. Perhaps by then muscle memory will have overcome panic. Maybe they’ll even have found someone to install that outdoor lift. I don’t know if they’ll remember this meeting: It is just the start, and there will be so many more conversations before they make it home.

Later that day, I run into Nohely’s father. He’s standing in the hallway outside his daughter’s room. I ask him how he’s doing. At first, he doesn’t say anything.

“It must be a lot to deal with,” I offer.

He nods. I wish there was something more I could say, some way I could reassure him that everything will work out. But I can’t promise that. When I meet his eyes, I see that he has started to cry. He looks embarrassed and wipes the tears from his face with the back of his hand.

Sleeping was the hardest. How can a parent get sufficient, restful sleep after a full day of suctioning, tube feeding, emergency trach changes, cleaning ties and gauze all day long and then go to sleep – especially if they don’t have a qualified/trained Registered Nurse?
Also, when the computer in the ventilator starts acting up – the alarms will continue to sound off – the parents will have to determine whether to ignore the alarms (and risk their child) or read a manual and troubleshoot. Hospital staff and nurses may not be able to help because a home ventilator is generally different from a hospital one.
When your child or dependent has a tracheotomy – you can only think about each breath they take. Literally. Self Care is utter nonsense when you’re a parent of a special needs – specifically medical needs – child. When the parent or caregiver eventually gets sick – they worry about giving it to their child, which can easily turn into a week or month long hospital stay. A common cold suddenly has a three word medical name or multiple strains that the lungs cannot kick. Family members Do Not Understand the parents’ request to stay home even if you *think* they are sick – and that can have ripple effects on the family dynamic that are heavily relied upon.
The only parents I could relate to were others who also had children with tracheotomies. They were my only source for emotional and mental support on FB.
I’m from Canada and live in Ontario – and I cannot imagine being precariously/under/un-employed in the States, being a single parent, having other children, caring for a medical needs child without social safety nets AND paying for health insurance. (I only heard of a few States, where the government paid the parent for caregiving duties on a chronically ill dependent.) Health care issues can happen to Anyone, Any Child, at Any Time.